maintnance chemo

dancer2
dancer2 Member Posts: 49
in Colorectal Cancer #1

Have not been on in awhile, seems like i am chasing treatments. Anyway, after 11 of 12 sessions with oxy/pump with leucovorin/erbitux my two liver mets shrank by mm's, as did the aortacaval lymph, the lung spots ( never testd) just hang around.....since i can't keep up the twice a month drive i will do maintenance here in town and i thought my LA doctor would supervise but apparently whomever administers the drugs really becomes your doctor....so i am very nervous as i really trusted the doctor in LA. My question is ' How many of you are on maintenance?'  for how long? did you have to go back home to start them? Since i got some shrinkage but not as much as I thought i'd have by now, do you all think maintenance is a good thing? Apparently, I am considered stable, that's it....how long does this go on for? How long can they give you these drugs without a break? I would appreciate any thoughts.....I go back to LA next week for the last session ( she took oxy out of the mix by the way) so maybe i can get a good idea from her about where i am at. I'd go back and do the drive if the sessions could be four weeks apart but as it stands even maintenance is twice a month..........is that normal? Bless you all!

Comments

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #2
    Maintenance Chemo

    In 2013 after 6 months of oxy/leucovorin/5FU/Camptosar/Avastin, they placed me on an additional 1.5 years of Avastin every three weeks.  My oncologist is two hours away but I managed to keep up with the treatments.  Now the cancer has returned and I am scheduled for treatment #2 of 6 this week of oxy/leucovorin/5FU/Cyramza.  My onc has told me that after the front-line chemo he plans to put me on maintenance of Cyramza every two weeks from now on.  Like you, I cannot see making a two hour trip every two weeks for the rest of my life just for a 30 minute treatment.  I also asked my onc about having the maintenance administered at home but still see him for consultation and oviously the standard is to refer me to the local doctor and cut ties with my primary onc.  I am not okay with that as I have trusted and been with him for the past 11 years during all this.  Not sure what I will do at the end of these 6 but I plan to ask about the chances of staying with him and using another chemo pill for maintenance.

  • dancer2
    dancer2 Member Posts: 49
    #3
    Thanks for the reply.........

    Thanks for the reply.............yes, it's hard to make two drives a month and stay for three days at a time..my drive is 350 one way, so that is a bit much, yet i would consider it doing it, if the schedule could be every four weeks....and like you, i have told my onc in LA, that she is to me anyway, my doctor and i want her to take the lead.........i only want to get the meds administered here at her direction..............apparently, it does not work that way, but her nurse told me that she would still be my doctor and hopefully the one here will fax everything to her........hmmmm I'm in a tizzy over all of this.....I want a liver resection, and was told by a liver surgeon in LA, everything was small enough and easy enough to get out, just needed a chemo that worked...when it came down to it, he was concerned about the lung spots of which no one has bothered to test because they were not big enough..........he said there is a test and that we needed to get a lung specialist involved, but i won't know anything on that front til i go back, and then he won't be there while i am there........hopefully my onc will have talked to him...........i feel like i have to keep repeating myself to get some answers. Terrible.....

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #4
    Hang in there and stay

    Hang in there and stay positive.  Sometimes you have to take control for the doctors.  Fortunately after all this time, my onc has learned that I am not ashamed to explain how things will go and he lets me take the lead when necessary (but with his advice of course).  I had a liver resection in 2013 because of mets where they removed 50% during a 7 hour surgery.  I spent 10 days in the hospital recovering but am really glad I opted for the surgery since that was an option for me.

  • abrub
    abrub Member Posts: 2,174 Member
    #5
    My local once handled my systemic chemo

    But my specialist onc, 3 1/2 hours away oversees my care and remains my primary onc.my local onc is super, and "plays well with others". He recognizes that I  require a specialist to oversee my case. His ego doesn't need to be in charge. Find someone local who can accept that role. 

  • danker
    danker Member Posts: 1,276 Member
    #6
    Travel

    I thank all that I was ony a half hour drive from my hospital!!!

  • kyolcu
    kyolcu Member Posts: 111
    #7
    Maintenance chemo

    I have started chemo with Acastin, Irinotecan and 5FU. After 5-6 treatment, my Onc put me on maintenance chemo for about 9 months(had avastin and 5FU pump every two weeks. Because CEA level went up now, she put me on triple chemo again.

  • dancer2
    dancer2 Member Posts: 49
    edited July 2017 #8
    Thank you for replying

    Thank you for replying everyone. I saw the onc who I was seeing before I went to LA. I am sure she must have heard from my doc in LA as she was was most kind and gracious, and grown up. I was an idiot but she made me feel comfortable, so we shall see how it goes as she told me she would follow the docs lead in different words of course.....It was nice to see her as a matter of fact. I am just since the last treatment been getting neuropathy in fingers and toes and it is hanging on this time and I was taken off oxy almost a month ago, also light headedness and sometimes slightly off balance. Strange, but par for the course?? I had my colon surgery almost two years ago, it's the liver mets that appeared after a successful ablation on the sole met a little over a year ago that only started to shrink in mm's since erbitux was introduced. Maintenance will be 5FU and erbitux as far as i know but see my doc in LA pretty soon for the last treatment there. Any ideas on the balance? Or what they think are lung mets which have not been tested yet? Hopefully soon as the doc here gave me the name of a pulmonologist and the liver surgeon in LA also said it was time to see what was going on with the lungs as he would not resect til he knew...........that is where i am at in this journey........

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